Thursday, December 24, 2009

I know that I should be saying Season's Greetings and Happy Holidays, and get away with saying Happy New Year.

However, this is my holiday which I'd like to share the celebration. If you are celebrating a holiday, feel free to comment with your greeting. I know that Hanukkah is over, but better late than never?

Updates are going to be delayed right now, as the holidays are causing massive dysfunction in my ability to do things in general. I expect to be holed up in my room playing Kingdom Hearts, or trying not to fall on my ass skating, for quite a while.

As a part of the NCD, Ari will be representing the neurodiversity perspective in advising the President, Congress and executive branch agencies

"to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society." (National Council on Disability website, main page)

If you haven't gathered from all the ruckus that's being made across the Internet, this is a big deal, for two reasons:

The first is that he is the first openly autistic appointee, breaking the unsaid barriers keeping autistic people from being a part of the decision process regarding, well, everything about our lives. This marks a major step in the inclusion of autistic people as a part of society, not just in terms of social inclusion, but also on the political and governmental level, and recognizes us as citizens of the countries we live in, with the rights, freedoms and responsibilities that being a citizen includes.

The second is that Ari is also the youngest appointee in the history of the United States, as being 22 years old, Ari is younger than the previous holder, Mike Lopez at the age of 24. However, while his critics are citing that his age makes him ineligible for his nomination, I would argue that age is not an indication of ability in this case.

Just looking at the UMBC, Newsweek Magazine and New York Magazine articles, Ari Ne'eman has been working in the cross-disability civil rights field for quite some time, and while he's not actively involved and outspoken about every issue (or at least, the media hasn't picked up on it), Ari still spearheads and pushes forward on many campaigns. In the very brief mini-bio that the White House produced:

"Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder."(Press Release, Office of the Press Secretary, 16 December 2009)

I'm going to forgive the White House for the slight slip with the "neurodiversity movement", since we're not an organized movement, per say, but we are a thought movement. We agree, more or less, with the same flow of thought that we seek to advocate in our daily actions and lives. However, I have to point it out that we are not an organization, because somewhere out there, some one is thinking that this is a part of some grand evil plot towards world domination, or something. Right, because we renounce autism as a tragedy to be avoided and cured, and want all autistic people to have equal civil rights and access to accommodations and supports, is part of a conspiracy...

Anyways, ending tangent there and moving right along.

The point is, we have a very experienced young man (younger than me, too) being nominated into a position that allows him (as well as other disability rights advocates) the ability to give advice and input directly to the President, Congress and other executive branches, a young man who is dedicated to promoting the human rights of all autistic people across the spectrum and works continually for this cause.

Yet, because he doesn't see autism and disabilities as an automatically negative element, but instead as a person's difference that can result in unique challenges and difficulties in a setting that is ill-suited to accommodate and support individuals, there are groups out there who would rather Ari not be a member of the NCD. Actually, that's a bit of an understatement; they are venomously against Ari and the neurodiversity movement of thought.

But of course, for returning readers of this blog, this really should not be a surprise. And of course, these people are exercising their right of free speech and protestation to encourage people to write to their Senators, stating that they are against Ari.

Now, this is up to each of you, but I would people who support Ari, even marginally, to contact their Senators and give them a balanced view on this, in that there are members of the autistic and cross-disability community who support Ari. Being that I'm Canadian, I don't really have a Senator to contact, but Nicocoer has provided me with some excellent resources to get in touch with Congress here , the various U.S. Senators here, and even President Obama at the White House.

And since the form on the White House site allows for people outside of the US to submit messages, here is mine:

Dear Mr. President,

I would like to let you know how much I am very pleased and delighted in your nomination of Ari Ne'eman to the National Council on Disability.

As an autistic self-advocate myself, I have always admired Ari for his dedication to promote the causes of the Cross-disability community and the best interests of all autistic people in the United States.

It heartens me to see the United States take such a progressive step towards including and accepting autistic people as citizens involved with the nations, and I hope that the rest of the world takes notice and learns.

On behalf of myself and other like-minded autistic individuals, I would like to thank you for including our voice in issues that concern us.

Thursday, December 17, 2009

If any of you wander over to my profile page here, you will see that I identify myself as being ADHD as well as on the Spectrum. So, I have problems with concentration and paying attention, alternatively randomly wandering off and hyper-focusing, and problems with some sensory issues. I may not be as sensitive as others on the spectrum, but I have my days where the smallest thing can distract me beyond reason and I get nothing done (batteries and spoons). Of course, this doesn't help my anxiety issues.

So I was really interested in B-Calm Sound when they were on the AWA Radio Show not too long ago. Okay, I'll admit it; I was skeptical. I've been in and out of anxiety therapy for a couple of years and for the most part, I've picked up a couple of breathing exercises, relaxation guides and alternating medications. I've also tried those nifty relaxation music tapes; I tended to turn them off since they were being the sensory aggravation. So you can understand I was initially skeptical about their AudioSedation tracks.

However, I was willing to give them a try. I browsed the site, looked over the sample clips, and asked about the "running shower" track that I heard about on the AWA show. I was interested in this particular track because I know from experience that I concentrate better while sitting in the bathroom with the shower going. However, it's not released yet, but lucky me, I get to review an advance copy. Woot!

So here goes:

My Review on B-Calm Sounds Running Shower as an Autistic and ADHD Adult

Since I'm taking courses, I decided to try the track out when working on my course work. So for a few days I listened while not taking my medication, and while I was taking my medication. Now, this is probably because of the difference between shower heads. I'm used to a stronger water flow, from both the shower and the faucet.I'll also notice that during my initial testing period, I was going through a major mental block, so my concentration and attention, not to mention "functionality" was severely impaired, even on medication.

Description

The track is of a gentle, continuously running shower. When I put it on and started listing to it, I began to feel relaxed and more at ease. Actually, to be honest, when playing it at night, I started to feel sleepy.I'll also note that the track acts as a filter more than a wall of sound. While the volume setting affects this, in general, I was able to listen to my parents, hear the dryer go off downstairs, and hear the doorbell while listening to the track. A slight side effect of it at this filter-type volume is that I would often think that it was raining outside. Of course, that's if a person wants to use it that way. It's also very pleasant as a complete sound block.

Anxiety

So during my initial testing, which I gave feedback to B-Calm, I found that my anxiety was noticeably decreased, both with and without my medications. Now, it didn't completely eliminate the anxiety, but it did help me to relax, take a deep breath and keep things under control.

Concentration

I found that, other than relaxing me, the track did not do much for my concentration during my initial testing period. This may have been because of what I noted above, that I was going through a mental block. Also, as I continued to test out the track outside of the mental block, because of the type of work that I was doing while listening to it.

What I discovered was that as a concentration aid, the track had very little effects (both on and off medications) when I was doing work, such as writing assignments, articles, doing research and exercises. For that, it was useful for reducing and managing anxiety, but I saw no noticeable difference in my concentration.

However, I saw results when I started listening to the track when doing course readings and going through my lecture notes. It wasn't as strong as when I sit in the bathroom, listening to the tap in the bath running, but I could read and understand the materials easier. I saw a definite improvement to my concentration.

Conclusion

In conclusion, I would say that the track is very promising, as an anxiety reduction aid and selectively to help concentration, even by way of reducing stress. I think that there can be some improvements, such as a stronger "water flow" that would produce greater results, at least in myself, but as is, the track does act as a filter for stressing sounds and reducing anxiety. Personally, I am very pleased at the results that I have had with the track.

A note of caution for my readers, I would not recommend using this instead of medications or other treatments for anxiety. This is just a tool to help, not completely remove, and this is my opinion as an individual.

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

President Obama announced today his intent to nominate the following individuals:

Ari Ne'eman, Nominee for Member, National Council on Disability

Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

Dongwoo Joseph "Joe" Pak, Nominee for Member, National Council on Disability

Joe Pak is Vice President and Loan Officer of the Farmers & Merchants Bank of Long Beach, CA. Previously, Mr. Pak worked as the Director of External Affairs for SBC/Pacific Bell, representing the company to city officials and state legislators as well as to community and business leaders. He is currently a board member of Acacia Adult Day Health Care Services. Mr. Pak has served on the Special Needs Advisory Board for the Orange County Transit Authority and on the California State Rehabilitation Council, where he focused on increasing the low rate of employment among people with disabilities. He is also a former Board Member and Program Chair for the Korean Health Education, Information, and Research Center. Mr. Pak earned his Bachelor of Arts degree from the University of Southern California and a Master of Business Administration from the University of Phoenix. At three years of age, Mr. Pak’s left arm was paralyzed by the disease polio.

Marie Collins Johns, Nominee for Deputy Administrator, Small Business Administration

Marie Collins Johns is Founder and Managing Member of L&L Consulting, LLC , a firm that offers management services to public, private and social sector clients. Mrs. Johns retired as President of Verizon Washington, DC after a career of over 20 years in the telecommunications industry. In that capacity, she led the $700 million operation, serving nearly 1 million customers. In addition to her corporate experience, Mrs. Johns has also worked in management positions in the public and social services sectors. She has a long resume of volunteer leadership positions that spans nearly 30 years. Mrs. Johns founded the Washington DC Technology Council to foster the growth and development of technology companies in Washington, DC and she is a former chair of the DC Chamber of Commerce. Among her many civic leadership roles, she currently serves as a member of the Board of Directors of the Girl Scouts USA, a trustee of Howard University and Chair of the Board of the Howard University Middle School of Mathematics and Science. Mrs. Johns is a long time resident of the District of Columbia, and she holds BS and MPA degrees from the Indiana University School of Public and Environmental Affairs.

Gwendolyn E. Boyd, Nominee for Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation

Gwendolyn Elizabeth Boyd is an accomplished engineer currently serving as Executive Assistant to the Chief of Staff at the Johns Hopkins University’s Applied Physics Laboratory and Chair of the Johns Hopkins Institutions Diversity Leadership Council. In her career as an engineer, and in her dedicated community service, Ms. Boyd has been a prominent advocate for women's equality and for the recruitment of African Americans into science and engineering. For her contributions to the community, she has received numerous awards and honors including: the 1996 Black Engineer of the Year Public Service Award congressional citations and recognition by U.S. Black Engineer magazine as one of the Nation's "Most Distinguished Black College and University Graduates". Ms. Boyd is a graduate (summa cum laude) of Alabama State University with a B. S. degree in Mathematics and a double minor in Physics and Music. She has the distinction of being the first African American to earn a Master of Science degree in Mechanical Engineering from Yale University. Ms. Boyd has also earned a Master of Divinity with Honors from Howard University and received Honorary Doctorates from Bennett College for Women and Lincoln University.

Jonathan M. Young, Nominee for Chair, National Council on Disability

Jonathan M. Young is Senior Counsel at FoxKiser LLP, and co-founder and Vice Chair of the Committee on Disability Power & Pride. Before law school he served in the Executive Office of the President (1998-2001), where he led several disability policy initiatives, provided counsel on disability policy, delivered numerous keynote addresses on behalf of the White House, and founded Disability Mentoring Day. At the NRH Center for Health and Disability Research (1996-1998), he authored Equality of Opportunity, a 1997 NCD publication that became the foundation for his 2002 dissertation on the disability rights movement. Awards include the 1987 NRH Victory Award® and the 2000 USJC Ten Outstanding Young Americans Award. He received a J.D. from Yale Law School, a Ph.D. and M.A. in History from the University of North Carolina at Chapel Hill, and a B.A. from Messiah College. Mr. Young is partially paralyzed from a spinal cord injury.

Carol Jean Reynolds, Nominee for Member, National Council on Disability

Carol Jean Reynolds is the Executive Director of the Disability Center for Independent Living (DCIL) in Denver, Colorado. DCIL is a grassroots service and advocacy organization that assists over 700 consumers each year, providing four core services to individuals with both physical and mental disabilities: peer counseling, independent living skills training, advocacy, and referrals. Ms. Reynolds is a Member of the governing board of the National Council on Independent Living and serves as Co-Chairperson of its Mental Health Task Force. She was awarded Board Member and Consumer of the Year by the National Association of the Mentally Ill – Colorado. She is also a member of the Colorado State Rehabilitation Employment Council. Ms. Reynolds speaks publicly on mental health issues, including providing testimony to the Colorado State legislature in connection with legislation providing funding to uninsured individuals with mental health issues. Ms. Reynolds has struggled with and overcome several mental health and substance abuse issues and has been in recovery for 26 years.

Fernando Torres-Gil, Nominee for Member, National Council on Disability

Fernando Torres-Gil is Associate Dean of Academic Affairs at the UCLA School of Public Affairs. Previously he served as a Professor of Gerontology and Public Administration at the University of Southern California, where he is still an Adjunct Professor of Gerontology. Before serving in academia, Mr. Torres-Gil was the first Assistant Secretary for Aging in the United States Department of Health and Human Services and as the Staff Director of the House of Representatives Select Committee on Aging. Mr. Torres-Gil also served as President of the American Society on Aging from 1989 to 1992. He is currently a member of the San Francisco Bay Area Polio Survivors, the National Academy of Social Insurance and of the board of directors of Elderhostel, the National Committee to Preserve Social Security and Medicare, the AARP Foundation, the Los Angeles Airport Commission, and The California Endowment. Professor Torres-Gil is a polio survivor.

Chester Alonzo Finn, Nominee for Member, National Council on Disability

Chester Alonzo Finn is a Special Assistant with the New York State Office of Mental Retardation and Developmental Disabilities, providing services, supports, and advocacy to individuals with development disabilities and their families; in October of 2009 he was recently appointed to the OMRDD’s Leadership Team. He is also President of the national board of Self-Advocates Becoming Empowered, Board Advisor to the Self Advocacy Association of New York State (SANYS) and a member of the Justice for All Action Networking Streaming Committee. Mr. Finn is also an active member of the Board of Directors for the ARC of the United States, the world’s largest community based organization of and for people with intellectual and developmental disabilities. Mr. Finn is blind and is developmentally disabled and is committed to fighting for the civil rights of people with disabilities.

Gary Blumenthal, Nominee for Member, National Council on Disability

Gary Blumenthal is the Executive Director for the Association of Developmental Disabilities Providers (ADDP), which aims to promote and ensure the health of the community-based organizations that provide supports and services for individuals with developmental disabilities. He also served as the Executive Director for the Alta California Regional Center, which oversees service delivery for children and adults with developmental disabilities in the Sacramento region. Previously, Mr. Blumenthal was the Wichita Regional Director for the Kansas State Department of Social and Rehabilitation Services, CEO for the Florida State Protection and Advocacy Programs for People with Developmental Disabilities, and Director of the President’s Committee on Mental Retardation during the Clinton administration. Mr. Blumenthal was also a member of the Kansas State House of Representatives for 11 years. He was an American Government teacher in the Shawnee Mission Public Schools in Overland Park, Kansas for 12 years. Mr. Blumenthal a graduate of the University of Kansas, Lawrence and the University of Missouri, Kansas City.

Sara Gelser, Nominee for Member, National Council on Disability

Sara Gelser currently serves as State Representative for the citizens of Corvallis and Philomath in the Oregon State House of Representatives. The youngest woman in the Oregon State Legislature, she also serves as Assistant Majority Leader and chairs the House Education Committee. Previously Ms. Gelser served as the Children with Disabilities and Family Support Coordinator for the Oregon State Department of Human Services. Additionally, she served as a regional coordinator for the Oregon Parent Training and Information Center, where she provided training to parents, educators and administrators about the implementation of special education law. Ms. Gelser is the founder of the FG Syndrome Family Alliance, a non-profit organization serving families and medical professionals dealing with FG Syndrome, a rare developmental disability. Ms. Gelser’s teenaged son, Sam, has FG Syndrome.

Seclusion and restraint legislation one of 12 items on Coalition Agenda

(Washington D.C.) -- The Justice for All Action Network (JFAAN), a coalition of disability-led organizations and allies, applauds proposed legislation that protects students with disabilities from the misuse of seclusions and restraints in schools. Introduced today in the House of Representatives and the Senate, the bill will equip students with disabilities with federal protection from abuse in the schools.

"There is a long history of students with disabilities being subjected to inappropriate and abusive seclusions and restraints," said Ari Ne-eman of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee. "The legislation introduced today is the first of its kind, going far beyond previous efforts to protect students with disabilities. We look forward to working with House and Senate leaders to pass legislation that addresses each of our concerns and provides students with disabilities with urgently needed protections from abusive seclusions and restraints."

While the JFAAN Coalition hopes to continue work with House and Senate leaders to ensure that the final legislation is the strongest possible, the bill introduced today is the most comprehensive legislation to date protecting students with disabilities from abuse in the schools.

"We commend Chairman Miller, Representative McMorris Rodgers and Senator Dodd for taking a stand against the barbaric treatment of disabled children and youth that has been allowed to take place in too many schools for too many years. Schools need to educate children without putting students in solitary confinement or using inappropriate and unsafe restraint. When schools become mini-prisons, families have no reason to send their children to school," said Andrew Imparato, President and CEO of the American Association of People with Disabilities, a member of the JFAAN Steering Committee.

Unlike previous attempts to protect students with disabilities, this legislation applies to all students

and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint. "The fact that our children are still subject to abuse is a disgrace," said Dana Commandatore, the parent of an Autistic child and a supporter of the Autistic Self Advocacy Network. "The legislation introduced today is an important step toward ensuring that students with disabilities are protected from abusive restraints and seclusions."

Legislation that protects people with disabilities from unwarranted seclusions and restraints is a key component of a campaign agenda developed by JFAAN. The 12-point JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition's agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

Tuesday, December 8, 2009

Really, I was going to work on other articles, like the review I've been poking at for the past month, or the draft of an article on burnout, but this honestly needs a response from me, because honestly, these people need to get their metaphors straight.

a lovely little exercise

As Orac has put it, Kim Stagliano of the Age of Autism has put up this lovely little gem of projection entitled "Harvard and CNN Report on Lower than Expected H1N1 Vaccine Uptake". (edit: apparently AoA has pulled the post off the net. Too late though). It is, as I see it, a beautiful merging of self-congratulations and self-indulgent, self-proclaimed righteous outrage. It's also a lovely little exercise in dodging responsibility by projecting blame onto someone else, based on one's own grand illusions and paranoid hallucinations. Otherwise known as scapegoating.

Despite your use of ad campaigns, non-profit pharma groups, pretty movies stars, curvy pop singers, NPR, The Chicago Tribune, the LA Times, The New York Times, press releases, a new science-based autism organization, magazines, the book publishing industry, and more, the majority of Americans surveyed by The Harvard School of Public Health are not convinced of the safety or necessity of the H1N1 vaccine:

She then launches into a self-indulgent rant on how Dr. Offit is blaming "anti-vaxxers" (oh, yes they are) for the decline in the vaccination rates, and how it's really Dr. Offit's fault because of his and the government's "strong arm tactics", that are backfiring.

one of the few doctors

Of course, this is based on the assumption that Dr. Offit is the "self-annointed face of public health and vaccination in America", and thus backed by the pharmaceutical companies that make vaccines and the government. This assumption is based on what? The fact that Dr. Offit, a vaccine inventor, is speaking up to advocate for vaccines and against the myth that vaccines cause autism?

Uuuuuummmm, right. Assumptions based on ... very little.

Look, if Dr. Offit is "self-annointed", that means that he's an independent, and thus is not actually employed by anyone to promote vaccines. Dr. Offit, if I remember correctly, and according to his website:

Paul A. Offit, MD is the Chief of the Division of Infectious Diseases and the Director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. Dr. Offit is also the Maurice R. Hilleman Professor of Vaccinology, and a Professor of Pediatrics at the University of Pennsylvania School of Medicine.

While he WAS (as in, past tense) a member of the Advisory Committee on Immunization Practices to the Centers for Disease Control and Prevention, DOES (present tense) publish books, and HAS (past tense) received awards for his work, he is NOT (negative) employed as a spokesperson, PR staff or any other funding for his advocacy. The reason why he gets a lot of media attention is due to the fact that he's one of the few doctors who is willing to stand up to the self-righteous paranoia of the anti-vax crowd. Given the responses he's had from the anti-vax crowd, I can see why not too many doctors would do what he has done. After all, who wants to receive harassing phone calls and death threats?

a reluctance to be responsible

Moving along though, Ms. Stagliano makes some interesting comparisons, comparing the anti-vax crowd to "ragtag colonials" and the vaccine-advocates as "Red Coats" (makes me wonder who the "natives" would be... hmmm....), and then claims that if a deadly disease was to break out, it would be Dr. Offit's fault:

Here's my real concern. What if there is an anthrax attack on American soil? Or a biological attack that could be thwarted with a vaccine? ... If such an attack happens, will the nation hold you responsible for having diminished the public's trust in vaccines? I think that's entirely possible. And dangerous. What a legacy.

So apparently because of his "strong arm tactics", and not because of a group of people who are convinced that vaccines are more harmful than the diseases, Ms. Stagliano thinks that Dr. Offit should be held responsible if the public distrusts vaccines should a biological attack that could be thwarted with a vaccine, occurs.

... Right.

Have I mentioned that Dr. Offit is an independent when it comes to advocating vaccines? That really, all he's doing is education and awareness? Yet HE is suppose to be responsible because THEY feel that vaccines are dangerous and IF a biological attack completely out of his control happens?

For the record... no. As mature adults, these people are responsible for themselves. So, if they, after reading all the information, decide not to vaccinate themselves or their children, it's THEIR responsibility. Not Offit's.Thus, Offit would not be blamed. They would. No amount of immature scapegoating and blame shifting is going to change the fact that they consciously made that decision.

Of course, Ms. Stagliano doesn't it that way:

As much as I'd like to think that 28% of the American population reads Age of Autism and visits our sponsors' sites, I can assure you that's not the case. Your message has failed. Think Shakespeare, Dr. Offit. Too much protest.

Yes, Ms. Stagliano, because Age of Autism consists of the entire anti-vax population and all the anti-vax propaganda in the entire country. I'm sorry, but despite your arrogance and self-indulgence, AoA is not the only anti-vax site out on the Internet, or the only outlet for anti-vax stories. As we have seen, the media does love a good story, has been very willing to pick up on tragic stories, and has picked up on anti-vax stories. Sorry, but while you are anti-vax, you are not the only ones. So it's not just you.

And I doubt that Dr. Offit is protesting too much when you're projecting so much. I mean, really. This kind of projecting indicates a reluctance to be responsible for one's own actions, coupled with inflated sense of self-importance that hinges on the delusional.

not very good at paying attention

Lastly, Ms. Stagliano makes a stab at being seen as reasonable:

Your brutal attacks on the the autism community as the source of all your ills is untoward and grossly out of synch with your message of protecting children. Our children are human beings too. Yes, we have raised serious questions about their health as it relates to vaccine injury. And yes, we have questioned your livelihood by doing so. But a pediatrician is supposed to care for all children, not simply the ones whose parents agree to full vaccination sans questions.

Hmm... Dr. Offit isn't attacking the autism community. Dr. Offit is, at worse/best, attacking the anti-vaxxers. How do I know this? Because, I happen to know that there is a good sized group of autistic people and parents of autistics who support Dr. Offit and are not anti-vaxxers.

Also strangely enough, Dr. Offit got into the field of vaccines in order to care for all children, which Ms. Stagliano would know if she bothered to pay attention to any of Dr. Offit's biography.

Here's also a funny thing. Ms. Stagliano claims that autism is a vaccine injury and that "our children", assumedly autistic children, are human beings too, and yet she's not very good at paying attention to the autistic adults who also should be included in the "autism community". And I'm not just talking about dear Craig. She seems to forget the children who are human beings, grow up to be adults who are human beings too.

So, Ms. Stagliano, pay attention to someone who is also one of "[your] children" in the "autism community":

I am an autistic adult who more or less received the same vaccine schedule as children nowadays, including the MMR. By your own theories that vaccines cause autism, I am therefore a person who is "genetically predisposition" to have had my autism caused by vaccines. If you follow the conspiracy theories, then the H1N1 shots are either designed to a) kill me or b) make people autistic, regardless of age.

On October 28, at 10:47am, I received a 0.50ml dosage of Arepanrix H1N1 adjuvanted vaccine. By the toxins myths, this is full of all sorts of toxins and mercury that causes autism, and is one of the "too many" that joins all the "too soon" vaccines apparently still in me.

Tuesday, November 17, 2009

ASAN is protesting Autism Speaks in New York right now at 6pm. They are meeting at Seventh Avenue and 57th Street, 154 West 57th Street in New York City at 6 PM to hold up signs and hand out flyers to Autism Speaks sponsors going in to their New York City concert with Bruce Springsteen and Jerry Seinfeld.

Given that it's nearly 5pm my time, it's a little late to advertise the protest. However, I realize that not everyone, even if they are available to go to the protest, are able to go, stand on a sidewalk and confront, even non-verbally, complete strangers.

So, what I'm thinking is this; letter campaigning, to celebrities and officials, emails to Autism Speaks itself (since it states that they would LOVE to hear from autistic individuals, email them at contactus@autismspeaks.org.), bookmark campaigns, and meme-ing.

But what are bookmark campaigns? Well, it's kind of like handing out flyers, except indirectly. You create/download cards, as in business cards, that can contain a slogan, some information, and a website URL. You print out the cards and then go to either libraries and bookstores, and slip them into books. I recommend related-topic books, such as the autism books, as well as some of the current bestsellers, recommended, new arrivals and speed-reading books. These are books which are most likely to get picked up, and concern the most relevant readers.

EDIT: Here's a card that I made up as an example. I fully give permission for people to use it for bookmark activism :D

As for Meme-ing, well, that's the continuous re-posting of information, whether it'll be quizes, questionnaires, or the chunk of information I'm about to post below, the reasons why ASAN is protesting Autism Speaks.

These are just a FEW of the ways in which we can protest. These aren't the ONLY ways to protest, and no one has to do them all, or any of them. People are certainly able to come with new ideas to protest that accommodates their abilities and what they feel comfortable doing.

If you have any of those ideas, feel free to comment with them. I'd LOVE to hear new ways of protesting.

1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Saturday, November 14, 2009

Before I get started, I want to address something. In this piece, I use words such as, well, "words" and "speaking". This does not just apply to vocal communication. I do not limit the concept of speaking to just vocal communication, but in this piece am using the word to apply to all manners of communication: typing, sign language, picture boards, drawing, etc. For too long has speaking been considered the act of communicating vocally. I'm not using it that way here.

Also, all bold emphasis is mine

In my church, we're studying the book of James in the New Testament, in a series we call "When the Rubber Hits the Road". In this series, we're studying how lessons from the past can still be used today, particularly from James, as a majorly practical book. A few weeks ago, we were studying the first part of Chapter 3, in how we speak and even, how we DON'T speak.Now, I'm not going to summarize the whole Christian sermon, because it'll be like I was trying to push my religion on other people, but it got me thinking. The three points where about words that don't match beliefs, words that are used as weapons, and the lack of words. I'm pretty sure we get saying things that don't match what we believe in, but it's the words used as weapons, and just as importantly, when we don't speak up at all that I want to address.

If a friend or relative makes a racist or homophobic remark, do you tend to confront them or let it slide? Are you more likely to confront them if it offends you directly or someone else who seems reluctant to speak up?

In the discussion, it was brought up that there are times when it takes us a while to fully process the conversation, delaying our ability to react to inappropriate remarks. Shock also tends to still our reactions, as well as uncertain relational standings where it might not feel comfortable or appropriate to approach an individual. Bev referenced Dave Hingsburger, a Canadian disability self-advocate who recently was inducted into the Canadian Disability Hall of Fame, who in 2008 came up with the idea of business cards as a way to educate and address issues such as derogatory comments, without being considered too sensitive and the effect of people just not saying those comments around you.

I think this is a very good idea. (Personally, I'd make the message more personal, in a "would you like it if someone said that to you?" kind of way, but same approach, really) It's a non-confrontational method of addressing the issue without making a big scene and potentially embarrassing not only oneself, but the person being addressed. This way, a person may be more receptive to understanding, which makes a big difference, in my experiences.

However, I believe that this can be taken to a level further. In the sermon I mentioned above, the speaker talked about a Christian's duty to speak up against injustice, that

When it comes to things like injustice and poverty and abuse and hunger and HIV/AIDS and racism, and kids dying from preventable treatable diseases, and environmental destruction, as people of faith, we cannot be silent. We have to speak. We have to put the power of words to work.

I don't think that it's just a Christian's duty to speak up against injustice. I think that it's a human's duty to speak up against injustice and to work to change the way society works in order to reduce the injustice that occurs. This is because injustice occurs that is injustice not only from a Christian's perspective, but from all manner of religions and backgrounds as well. Injustice is not exclusive. It affects everyone, in one way or another.

Injustice, of course, can take many forms, from discrimination, poverty and environmental destruction, to even the simple misuse of words, as addressed above. However, what is injustice in the Disability community? Certainly, discrimination and abuse is the most obvious form, but does it not go much deeper? Is inadequate services and supports also not an injustice? Is attempting to cure and change people to fit a pre-conceived mold that doesn't fit also not abuse and an injustice? Should we not be working to make the changes to stop this?

[T]here's an element of moral superiority in assigning disability status, an absolute sense that the non-disabled is superior. And I think that's wrong. I do. So, I looked at these sixty plus individuals who attend the center with my son, whom he has known for six years now, who care about him and accept him as he is, and I thought about those people who would push for cures for each of them as if who they were was inadequate, insuffient, insignificant. And I thought of those who would look at these interesting, animated individuals and see them as lacking, as less than, and I was irritated. I think that, when the support is adequate, when the acceptance and appreciation is there, these people who are unable to care independently for themselves can have very good, extremely satisfying lives. Where the support sucks, where the appreciation and respect are not there, I think their lives can by an abysmal hell.

I think that rests squarely on society's shoulders. And I think that organizations that promote the idea of vaccines as the culprit for autism damage their children's future and mine when they engage in their bullying and fear mongering tactics. I think they don't speak for me, for my children, for many of us and it's more than time to make sure that if people in mainstream society hear someone calling themselves a warrior or an autism parent and they aren't in the military and aren't autistic themselves, the mainstream will have a real clue as to the belief structure of the person they are dealing with. These parents haven't put child-centered language first in their advocacy; they've placed themselves first. It's about them. About recovering their American dream of a cushy, easy life in which their children outshine others.

To look at someone with a disability and feel sorry for them is to demean them and their inherent value. It presumes you have an elevated status above them. To look at them and feel empathy for their challenges and respect for how they persevere is to see them as fully human. To work to assist them in creating what they consider meaningful, valuable lives while working to reduce any suffering, to heal illnesses is not noble. It's the right thing to do.

Recently, we witnessed a monumental achievement in the fulfillment of the Government’s promise to end institutionalization for individuals living with developmental disabilities. The official closing of Huronia, Rideau and Southwestern Regional Centres paved the way for Kerry’s PlaceAutism Servicesand its community partners to engage the public in gaining a better understanding of these individuals and their right to live, participate and prosper as valued members of society. The struggle is not over, however, as we must continue to help people in communities throughout Ontario and elsewhere to overcome stereotypes and misunderstandings to understand the need for, and to create appropriate environments and supports in which individuals with autism spectrum disorder can thrive.

Now, I may be a bit biased, since I've worked with Kerry's Place for a while, and even now am active as part of community education and awareness projects. However, from my experiences, Kerry's Place has demonstrated that it is possible to make a difference, to create an environment that is supportive, accepting and safe for autistic people to become as independent as possible and fully integrated into society. It may take a lot of work, but it's a realistic goal.

This may be as simple as handing out cards when you come across discrimination, or working with different groups to overcome differences and reach understanding. It may be something small. You can always start small, but I would hope that we will work our way up to doing big things to make a large difference.

Friday, November 6, 2009

We, the undersigned organizations representing self advocates, parents, professionals and allies in Disability Community, are writing to you to express our concern about Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities. The most recent example of lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Thursday, November 5, 2009

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people with the AS diagnosis (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

and then gives his own opinion:

the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism comunity.

I recently discussed this issue with my mother. She's a high school teacher, and while she understands my concerns and agrees that Asperger is Autism, she has explained that, as a teacher, the label has been a useful tool for her to figure out what can and can't a student do, and what accommodations to make in the classroom. I suggested to her that perhaps then more descriptive IEPs may be in order, so that the knowledge behind the label will not be lost in the (highly likely, yet unconfirmed) merge. With that scenario, she agreed that then there would be very little point in keeping Asperger's as a term in the DSM.

I support merging Asperger's with the rest of the ASD, as it simplifies classification and eliminates confusion and potential discrimination.

One of the concerns that has been brought to my attention about this issue is that if Asperger Syndrome is no longer in the DSM, that all the hard work of raising awareness will be wasted, and that people with the diagnosis of Asperger's will fall through the cracks again.

However, I think because of the awareness that has been made about Asperger Syndrome can be shifted to be about ASD. Also, the wider range of diagnostic criteria means that people previously diagnosed as Asperger Syndrome will be recognized as being ASD, and thus will not fall into the cracks as before. Of course, this is under the impression that appropriate services for all ranges of the spectrum and all ages, from childhood to adult, are available. If those services aren't available and implemented properly, then yes, people will fall through the cracks.

Which needs to be put into place even if Asperger Syndrome isn't removed from the DSM.

Friday, October 23, 2009

As has been noted on lbrb, yesterday the landmark Autism Bill passed its final stage in the House of Lords today to become England’s first ever disability-specific law, and once it receives Royal Assent, will become the Autism Act. (I like how simply things are called over there, Autism Act, Employment and Support Allowance, National Autistic Society... just beautiful)

Now, the National Autistic Society, who drafted the bill on behalf of many autism charities, is also demanding that the strategy tackle the low numbers of autistics who are employed, and making sure that autistics are supported in applying for work, benefits and in the workplace through their Don't Write Me Off Campaign.

From the About the Campaign page on the site:

We followed the experiences of a group of people with autism as they applied for Employment and Support Allowance (the new benefit for people who may find it harder to get a job because of their disability), and surveyed a group of adults about their experiences of work and applying for benefits.

From this research, the Don’t Write Me Off campaign found that of the people we surveyed:

just 15% have a full-time job

one third are currently without a job or access to benefits

79% of those on Incapacity Benefit want to work.

The experiences that people with autism have shared with us show that, sadly, the majority are not getting the support they need to find a job and many more cannot access the benefits they need to live on.

However, it doesn’t have to be like this. There are clear and often simple steps that governments across the UK can take to deliver real change for people with autism. Adults with autism need:

Employment and Support Allowance to work for them

Jobcentre Plus staff to understand and meet their needs

a national strategy to transform access to employment.

With your help, we can make this happen. Please join our campaign, to help make the system fair for people with autism.

As some one who would love to see this sort of support, strategy and campaigning in my own country, who is on social assistance and is applying for social housing, I fully support this campaign. I know there's not a lot I can do from this side of the ocean. However, I wish to do what I can.

In my opinion, it is a straight-forward, strong no non-sense piece that examines the skepticism surrounding present-day vaccines, with a focus on Dr. Paul Offit and the threatening reaction from a part of the autism community, including the personal threats made by phone and mail, and the attacking comments about him by celebrity anti-vax spokespersons. It also takes a look into the facts about vaccines and the claims of the vaccine-causation groups in an honest and clear manner.

As Kim has pointed out on her blog post Doing Something Right: Conniptions at AoA posts have been made on AoA encouraging harassing Amy Wallace for her piece, which I need to point out, does nothing to over turn the view of them made in the piece. However, given the amount of research Amy Wallace has made into the situation, I don't think that AoA will be too successful in intimidating her. (Yes, I know that AoA isn't on the list of anti-vaccine sites that Amy lists, but honestly, I wouldn't be surprised if many of the membership is the same).

Either way, I applaud Amy Wallace for her strength and courage in the article, in writing a well documented and researched piece that doesn't hold back in presenting facts. Congratulations and thank you!

Now, I'm not refuting that Desiree Jennings is suffering from Dystonia. It has been noted that sufferers of Dystonia have near continuous pain, difficulty with mobility due to cramping and involuntary muscle movement.

What makes me question Mrs. Taylor's claims to be an educated woman with a Practicum Master's of Clinical Counseling is her question

So if this injury happened when she was 18 months old, before she had learned to talk or learned social norms, would she not be diagnosed with "autism"?

The answer, Mrs. Taylor, is no. The symptoms of Dystonia only are similar with autism is that there are repetitive movement. And I'm taking about real autism, Mrs. Taylor, not your supposed "immune-disorder-caused-by-vaccines-that-display-autistic-traits". You believe your son has an immune disorder; you should be calling it an immune disorder that has been misdiagnosed, not quoting it as "autism". Autism is, for the record, a very real neurological wiring of the brain. It has been noted by several studies now, that when doing brain imagery, the autistic brain is very physically different that the supposed "normal" or neurologically typical brain, with indications that the cause of differences would have to occur while a babe is in the womb, at the point of pregnancy, if I remember correctly.

Either way, Dystonia is still very different from an acquired autoimmune disorder or autism, which is clear if she had even bothered to even look it up in Wikipedia.

Symptoms vary according to the kind of dystonia involved. In most cases, dystonia tends to lead to abnormal posturing, particularly on movement. Many sufferers have continuous pain, cramping and relentless muscle spasms due to involuntary muscle movements.

Early symptoms may include loss of precision muscle coordination (sometimes first manifested in declining penmanship, frequent small injuries to the hands, dropped items and a noticeable increase in dropped or chipped dishes), cramping pain with sustained use and trembling. Significant muscle pain and cramping may result from very minor exertions like holding a book and turning pages. It may become difficult to find a comfortable position for arms and legs with even the minor exertions associated with holding arms crossed causing significant pain similar to restless leg syndrome. Affected persons may notice trembling in the diaphragm while breathing, or the need to place hands in pockets, under legs while sitting or under pillows while sleeping to keep them still and to reduce pain. Trembling in the jaw may be felt and heard while lying down, and the constant movement to avoid pain may result in the grinding and wearing down of teeth, or symptoms similar to TMD. The voice may crack frequently or become harsh, triggering frequent throat clearing. Swallowing can become difficult and accompanied by painful cramping.

Electrical sensors (EMG) inserted into affected muscle groups, while painful, can provide a definitive diagnosis by showing pulsating nerve signals being transmitted to the muscles even when they are at rest. The brain appears to signal portions of fibers within the affected muscle groups at a firing speed of about 10 Hz causing them to pulsate, tremble and contort. When called upon to perform an intentional activity, the muscles fatigue very quickly and some portions of the muscle groups do not respond (causing weakness) while other portions over-respond or become rigid (causing micro-tears under load). The symptoms worsen significantly with use, especially in the case of focal dystonia, and a "mirror effect" is often observed in other body parts: use of the right hand may cause pain and cramping in that hand as well as in the other hand and legs that were not being used. Stress, anxiety, lack of sleep, sustained use and cold temperatures can worsen symptoms.

Direct symptoms may be accompanied by secondary effects of the continuous muscle and brain activity, including disturbed sleep patterns, exhaustion, mood swings, mental stress, difficulty concentrating, blurred vision, digestive problems and short temper. People with dystonia may also become depressed and find great difficulty adapting their activities and livelihood to a progressing disability. Side effects from treatment and medications can also present challenges in normal activities.

In some cases, symptoms may progress and then plateau for years, or stop progressing entirely. The progression may be delayed by treatment or adaptive lifestyle changes, while forced continued use may make symptoms progress more rapidly. In others, the symptoms may progress to total disability, making some of the more risky forms of treatment worth considering.

And that's just from Wikipedia. Now, I know that quoting Wiki is not very academic of me, and if this was an academic paper, I would automatically get a 0 and possibly prosecuted for plagiarism. So, I took a look at the Dystonia Medical Research Foundation, on their What is Dystonia page, found this:

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom....

....Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.

And because I'd like to remind Mrs. Taylor as to the diagnosis of autism, from The Geneva Center for Autism, autism is marked by (1) qualitative impairment in social interactions, (2) qualitative impairment in communication, (3) restricted repetitive and stereotyped patterns of behaviour, interests, and activities, (4) delays or abnormal functioning in at least one of the following areas, social interaction, language as used in social communication, or symbolic or imaginative play. You can find the complete DSM-IV criteria here.

Also, under the International Statistical Classification of Diseases and Related Health Problems 10th revision, Autism is under Pervasive Developmental Disorders (Chapter V. F84.0) as a Mental and Behavioural Disorder, while Dystonia, specifically Drug-Induced Dystonia is under Extrapyramidal and Movement disorders (Chapter VI. G24.0) as a Disease of the nervous system. You can look it up on the 2007 version here.

Therefore, Mrs. Taylor, the answer is "no". Dystonia would not be misdiagnosed as Autism.

So, dear Mrs. Taylor, next time you want to ask a question about an apparent similar disorder, do some research first. You'll cause less misinformation and confusion that way.

P.S. Mrs. Taylor, have you read the UK study that reports that autism rates in adults are the same as in children? This includes the full spectrum of autism, btw, for both rates.

Wednesday, October 14, 2009

A couple years ago, I noticed a new blog by an autistic boy. As a young boy, his entries were simple accounts of the day and what he enjoyed. Unfortunately, I have lost track of his blog, and so have been unable to see how he has progressed with his writing. His writing reminded me of early entries in my diary as a child, except, mine weren't about what happened, but rather vented the anger and pent up frustrations I experienced daily and was unable to express verbally. The writing style was similar though; simple sentences and emotions straight from the heart.

Recently, I've taken a look at my blogging from high school, and it basically equates to "this happened today, so and so did this and I'm upset". I compare this to how I write right now, which is more or less "this is what happened, my thoughts as it happened, my reflection of what might have also happened, how it could be handled".

In other words, I took a look at the evolution of how I use journals from merely getting steam off my chest to using it as a tool to sort my thoughts, feelings and actions, reflect on the same of others and sort out what I can do, as well as getting feedback and support from others, both those I know in real life and friends I've only met online, with the occasional complete stranger.

As seen by the thousands of other autistics online, computers and the internet is proving to be quite the communicative tool. I recently met a woman who referred to herself as a "Low Functioning Autistic" on the WrongPlanet forums, who was able to express her opinions by typing. Carly Fleischmann is another example of an autistic who has found the ability to communicate by typing. For many of us, we have found that we can type what we think, feel and want to say a lot easier than speaking and for some, even than writing.

What this means, to me, is that speaking is not the only method of communication. It's one of the methods that appears to be the most easiest by the majority, but it's not the only way.

So before a person is written off as non-verbal or unable to communicate, I would suggest alternative methods to communicate. Journal writing, as I've seen, has been a great outlet of self expression. As I've written on the Autism Parents Forum (to a parent with an autistic daughter)

In terms of self-expression, I find speech rather difficult to express feelings...

...I suggest writing a journal, either private or public, written or typed. Written journals are good for improving handwritting, but if she's more comfortable with typing, she could keep a private folder of word docs or make use of the many many blogging sites out there.Private journal writing, I find, helps with getting out pent up frustration, anger, etc, that may not be comfortable expressing in public. Public journal writing, though, helps with expressing to other people. Both, I find, help with thinking through situations and a place to say one's peace without being interrupted.It takes a while, but at the very least it gets things OUT and not pent up inside.

If typing/writing ain't her thing, there's always drawing. While I hesitate about those face-recognition programs and games, since often the faces are cartoony and don't actually look like real human faces, thus conversion of knowledge to practice is tough. However, using cartoon-ish faces as symbols can work. (I'm resisting the urge to go into a university level discussion on how letters are symbols) So, instead of "I'm feeling happy" , "I am feeling "Also, using colours for feelings, modified pictographs or something. I draw a lot to express myself, I know that. In grade 3, I drew my teacher as a lovely lady with claws and teeth to express how much I adored her, yet I thought she hated me.In grade 12, I drew a comic of my day, to express how throughout the day I was getting more and more overwhelmed until I crashed (I think it's framed in the special ed room now...).If she already draws, pay attention.

People are creatures of communication, using a wide range of different languages to communicate. So, let us speak.

Friday, October 9, 2009

I wanted to discussion the relationship between spoon theory and what I consider battery theory in regards to autism, since I have found the both of them so useful as metaphors to explain energy and ability to do things on a day to day basis.

To summarize it briefly: each day we are given a number of spoons which we use throughout the day to "pay" to do things. For a lot of people, they get a near unlimited number of spoons, but for someone who is sick or disabled, the number of spoons can be limited and even changes from day to day. Also, the "cost" of things may also change. One day, getting dressed may cost one spoon, another day, it may cost two spoons. One day, leaving the house may cost two spoons, another day, it costs five. These are just examples to illustrate spoon theory. Often I have found others who use spoon theory to illustrate their well-being.

For example "this morning, I seem to be short on spoons" or "today I have enough spoons" or "I don't think I have enough spoons to do that"

My Battery Theory works kind of like Spoon Theory, except that it has to do withenergy in general and being able to do things (use spoons). A lot of the time I specifically use it to show how much social interaction I can handle. For me, even a little social contact, like someone walking by, drains my battery. Sometimes one person drains the battery more than three people. On a good day, the drain is slow and paced, on a bad day, the drain is fast and uneven.

I describe the energy levels in my battery with colour levels. In each colour level, there is an "early" and "late" stage, meaning, how long I've been in each colour. The longer, or "later" I'm in a colour, the harder it is to recharge. I have four colours, Green, Yellow, Orange and Red.

Green: I'm good, I'm refreshed and at my peak. At this level, I can do pretty much anything. In this stage, I'm good to test my boundaries and sensory input, and can put up with a lot.

Yellow: I'm a bit tired, but I'm holding in there. At this level, it's fairly easy to take short breaks and get back into Green. This is a pretty safe tired level. However, it has taken me a long time to recognize myself at this level and being able to differentiate it from the other tired levels.

Orange: I'm pretty tired. Still hanging in, but I'm starting to be more likely to make mistakes, loose skills, and be very intolerant of sensory issues. I can handle things, just not as good as I usually can, might get whiny, more intolerant. Withdrawal, time out, or as I call it "lone time", is highly recommended at this point. It takes about an hour or so to get back to Green or an early Yellow and I try not to get any more drained than a late Orange on a regular basis.

Red: This is the danger level. If I'm in public, and I say/type/write that I'm at red, it means that I'm running on low or emergency energy, and once I get to a safe, private location, I'm going to crash. At this stage, withdrawal isn't just highly recommended at this level; it's essential. This is the level where there is a high risk of burn out, meltdowns and overload. Actually, it's not even a risk, it's a guarantee.

In an early Red, I can actually mimic "functioning" or green. However, at both early and late, it can take an entire day for get myself back to Green. And that's if it's uninterrupted. When I've reached Red, it's harder for me to recharge, and so any interruptions, whether it'll be talking, notes for me to read, just tends to drain. Actually, I think in a Red, the only form of communication I can handle is online, and sometimes not even that.

On a good day, it takes me six hours for me to reach Red, after which there's really no way for me to socialize. Sometimes upon reaching Red, I'll just shut down, either really quickly or slowly, but there are times where I pull in emergency stores and actually appear to be functioning or in a higher level. But it's a survival and emergency stores, and is basically me "borrowing" spoons from future days, and results in my needing to recharge more frequently in the following days to recover.

For an example, I went to an international symposium as an autistic artist to display my work in the gallery. I also brought along a friend who was interested in attending some of the panels. Being low on cash, I arranged to stay with a friend who lived in city limits and planned to use the commuters train to get to the symposium location each day. This required us to wake up very early in the morning to catch a bus to take us to the train station, where we catch the right train to take us into the city. Since we didn't get back to our lodgings till late, we got about 3 hours of sleep each night. My friend ended up sleeping under the display tables, and since we had to have someone at our table all the time (for security), I ended up manning the table with little to no breaks each day. For three days.

I did it. I was extremely tired the entire time and I know my skills across the board suffered, but I did it.

Until I got home; then I crashed and had to take an entire week to recover.

Part of the length of recovery was due to the fact that I was also in school at the time, but it was also that I had been running on emergency supplies for longer than I should. As my roommates will concur, I didn't really operate at my usual levels that week, even almost became violent during a minor disagreement.

Now, this is not to say that this is how it works for each autistic person. I understand that each autistic has different limitations, boundaries and tolerances. Things are different for each of us.

However, I offer this as a way to explain a part of what it is like for me to be autistic, just as Christine used her Spoon Theory to explain living with Lupus. If it seems to fit by way of an explanation, both to other autistic and parents/caregivers of autistic people, then it is a good way to explain.

Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (attached) will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization.

The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”. The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.

ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.

Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related). The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:

a)Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death

b)The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries

c)The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership

“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.”

In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.

The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”

ATTACHMENTS:

•Media Advisory on Protests

•Letter to Autism Speaks sponsors

About ASAN

The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. For more information, visit http://www.autisticadvocacy.org/.

WHAT: The Autistic and Cross Disability communities are protesting exploitative practices, lack of representation and unethical fundraising tactics by Autism Speaks, the most well funded autism advocacy group in the country.

WHO: The Autistic Self Advocacy Network (ASAN), a non-profit organization run by and for autistic people.

WHY: Autism Speaks uses damaging and offensive portrayals of Autistic people as fundraising tactics, does not include any Autistic people on its board or leadership and spends very little of the millions of dollars that it raises for things that help Autistic people or families. See the joint letter, attached.